Relocated discussion re.diet started by skyflower

[Ivan]

ivan, i do not see how any of your comments can be construed as constructive. and please keep a record of these conversations here, these were all part of our next steps on proceeding with lucio's treatment before it degraded. everything that you have said is a given, everybody understands those points, but you are drilling it into our heads "not backed by science" as if that is the end all argument (like rheza with the noni). scientifically wouldn't you want to know what people are taking? to see if diet or supplements does play a role in this? but your arguments are not allowing people to be open about what is actually going on or how they are going about it, taking a drug or having a surgery is just one aspect of it. if people aren't open about what they are taking, then there is no record of what is or isn't working. as probably stated before, we're just aerospace engineers, medicine is not our field, but we are intellectually curious about this and wish this site was more open. abstinence only education does not work (even for nutritional supplements).

I don't quite know what to say to that. I assure you that what I said is NOT a given to many people and not everyone understands my points. We'll move anything not relevant to Lucio out of this thread to the lifestyle section. Everything else will remain in place. Also, I am not discouraging anyone from saying what they take. Where did you see me do that?

Do you think Rheza should drink that random stuff - because his RELATIVES recommended it? Well, they surely have absolutely no freaking idea about sarcoma, ASPS, and cancer treatment in general. They are probably illogical, irrational, emotionally involved people who are afraid to lose a loved one, and they are eager to believe uncorroborated stories of a new "miracle drug". These kinds of people are more likely to do more harm than good in trying to help. That's like reverting to witch doctors with mysterious potions boiling in cauldrons, and an average life expectancy of 35 years.

Ok, so suppose that every single member of this board reported what supplements they've ever taken, and you had a complete record of their cancer growth over those periods (I know this is not going to happen, but that's the ideal situation). How would you analyze this data to end up with a meaningful result on which you can base your decisions? I think there are simply too many unknown variables to devise anything useful. Everyone is trying different things, and their base progression rates are different.

What would you say to someone who suggested using ancient wisdom and word of mouth advice from a non-engineer instead of physics, calculus, and computer simulations, to calculate the wing cross section for a supersonic jet? In my opinion, that is absolutely equivalent to seeking alternative medicine advice in place of evidence-based medicine. Since, apparently, you disagree with me - please explain to me why you think that this is not so. Again, I am encouraging you to share your opinion, and continue discussion on this subject.

[Amanda]

Hello Sky,
I hope that you didnt think i meant to not talk about herbs and stuff I was sharing what happened to me and i never ever meant to say not to talk about things .. i actually think that it needs to be said so everyone will know what is ok and not and why and what others did/ Then the person can make a decision on there own.
Cancer and any desease like this is the individuals path and i wouldnt tread on that ever
If in any way you think i meant that i a sorry i didnt

I don't think anyone here, from anything that i've read so far, is meaning to discuss changing diet as a cure for ASPS, especially not in place of surgery or conventional treatments. but i do believe that by placing such a heavy emphasis on the need for peer-reviewed research is blocking any meaningful discussion on this topic. i think most people on here are looking at diet and exercise as a supplement to whatever treatment they are on, and there probably wouldn't be any meaningful studies on diet and ASPS, as there is no return on investment. are there any japanese ASPS patients out there? because i think japan is very good about integrating herbs and chinese medicines into what we would consider conventional treatments. there was a johns hopkins study on broccoli sprouts and anti-cancer properties. how does this affect ASPS? don't know, probably not. will there be a study? probably not. will it hurt you to eat a few sprouts with your dinner? NO. they are nutrient-packed anyways and tasty. same thing goes for lots of tasty herbs, spices, mushrooms, plants that you would probably have for dinner anyways.
the point is, i think people are eating healthy anyways and many are adding supplements, and discussion of this type, because not scientifically backed up, is completely shut down. for people on these drug trials, the only factor researchers and readers are following is the drug, and negative dietary interactions, and NOT positive activities in diet and exercise because the burden of proof is just way too high, especially since their research funding is just for the drug itself. it would be meaningful for us anyways to have this information available. right now, i think this kind of discussion is done offline, but it would be nice if how people are changing their diets was not silenced or looked down-upon, and could be followed by everyone. nobody is expecting a cure from diet changes, and everyone should do their own research before incorporating anything.

lucio's appointment with dr. lee is sept. 30, everything else is still up in the air. hopefully we'll get word from the case manager next week regarding sutent.

[Olga]

As one of a board's admins I am actually very glad to find a discussion that is of interest to more people, so please, ask questions and post your positive or negative experiences in a relevant topic, just adhere the general rules - stick to the facts, argument your position by the articles not the degrees or emotions, respect other people's opinion if they happen to disagree.

About the subject of this discussion - I am not sure why would anyone feel that this subject is not welcome to discuss here. Not a single post re. anyone personal experience was ever removed here. We are not blocking any meaningful discussion on any topic relevant to ASPS, but it really has to be that - meaningful. If someone makes ungrounded suggestions, it was and will be removed in order to keep this board sane in order not to mislead other people with less ASPS knowledge and potentially harm them, swaying away from the other available options. If people, like Rheza ask about the noni, all I can say that we have no knowledge that it helped to any ASPS patient and I really have nothing else to say.

If you stay on the board for the longer time you will realize that there is really no way of knowing that any supplements/food helped or otherwise worsened someone ASPS situation - we can discuss any single case and get nowhere with the analysis. Let review Andreas K. case that was used by 'F' as some example of the probably positive influence of the supplements/food restrictions on his long term stability. He had 2 rounds of the conventional chemo (AIM) and one lung surgery to remove a few biggest mets in one lung a long time ago in Vancouver. Despite some nodules seen in the other lung re remains stable for more then 10 years. He was taking some supplements/restricted some food during some periods of his ASPS journey, but he was also not taking anything during the other periods. The visible nodules stayed the same regardless his diet. My best guess on this situation is that the chemo was effective in two rounds and these mets are dead. Necrotic, calcified. Has nothing to do with the diet, because when he was not taking anything they did not grow regardless. My guess can be wrong as well and there we are - unable to reach any consensus.

We have a patient that spent a day with the native people singing along in their native ritual. Most of her lung mets regressed for awhile. What does it mean? I guess singing for a long time does good damage to the lung mets.

We have a few people that do nothing, eat everything and are stable. We have a boy whose multiple tiny lung mets regressed spontaneously, I never heard from his mom that he was on any supplements if you do not consider healthy teenager appetite a diet (you know when people eat all the pizza and drink all the coke that is there at all). I know people that were on numerous supplements and it did not help at all. I have no clue what to make of it.

[Fictional]

Maybe this is just my idea - but can't some of us have a thread to talk about exercise and diet with out long, repeated posts by moderators who do not believe exercise and diet are significant?

I think Ivan- you've made your viewpoints clear, but maybe some of us still just want to talk and share info without more posts from you challenging everything we say.

One of the points about diet is that you have to eat something anyway. Some of us just want to know what might be some of the healthier options if you have cancer. BTW, whenever we've told our oncologists about drinking green tea, no one has minded.

Finally, there is some evidence in high green tea drinking countries that it may be beneficial. It is not a sure thing as with other things, and the problem with these large scale studies is that there can be many other confounding factors.

http://www.cancer.gov/cancertopics/fact ... ention/tea

Anyway, sorry if anyone is offended. It is nice to feel one is part of a community and not in the courtroom. I know I have learned a lot from each and every one of you.

[Amanda]

Hello 'F',
I would also like a place to talk about this and as you have described...


[quote="'F'"]Maybe this is just my idea - but can't some of us have a thread to talk about exercise and diet with out long, repeated posts by moderators who do not believe exercise and diet are significant?

I think Ivan- you've made your viewpoints clear, but maybe some of us still just want to talk and share info without more posts from you challenging everything we say.

One of the points about diet is that you have to eat something anyway. Some of us just want to know what might be some of the healthier options if you have cancer. BTW, whenever we've told our oncologists about drinking green tea, no one has minded.

Finally, there is some evidence in high green tea drinking countries that it may be beneficial. It is not a sure thing as with other things, and the problem with these large scale studies is that there can be many other confounding factors.

http://www.cancer.gov/cancertopics/fact ... ention/tea

Anyway, sorry if anyone is offended. It is nice to feel one is part of a community and not in the courtroom. I know I have learned a lot from each and every one of you.

[Arch]

We have access to a lot of information and really don't know what to make of it all. I think many patients at some point or the other consider diet and lifestyle changes and feel the need to discuss with someone who understands better than themselves, having a discussion here will help. Atleast people would know that there are different views and so would not blindly follow something. Lets hear it all out...
We share our treatment details, lets also share little things like our exercise routines and diets..nothing conclusive will come out of it now, but who knows, some patterns may emerge later. Afterall, we are the biggest ASPS community.

[Bonni Hess]

Welcome back from your trip Olga, and thank you for moving this discussion to an appropriate area of the Forum. Thank you too for bringing some sense of order and rationality to this unnecessarily heated and sometimes negative "discussion". Despite some of the accusations and negative comments which have been made I, like you, am very glad to have a topic which is generating more active participation and discussion from ASPS Community members. As I have previously stated, discussion on this Board regarding any subject relevant to ASPS is, and always has been, strongly encouraged. It is vitally important to our shared goals of finding the best treatment options and making the best treatment decisions for this challenging disease to continue sharing documented and anecdotal information, personal observations and insights, AND opinions. The fact that there is still no definitive cure for ASPS, illustrates and validates the fact that no one knows for sure what the best treatment and Lifestyle approach is.
One of the participants in this discussion has stated that she is the only doctor on this site, which is actually incorrect as we have a couple of other members who are also doctors, but who are unfortunately just less active and vocal on the Board. While being a doctor with molecular biology experience is certainly admirable, and the information and input shared is deeply appreciated and valued, it does not necessarily make a person an authority on ASPS, just as my nine years of ASPS experience and my full time extensive ASPS research and active networking and communication with other ASPS patients and their families does not make me an expert. I am not a doctor, which I have always clearly stated and acknowledged. I am just the mother of a daughter with ASPS who is aggressively seeking an effective treatment and cure through every possible research and communication resource available. I am deeply grateful for everyone's shared contributions to this Forum, and I truly respect everyone's opinions, even though I may not always agree with them as a result of my own extensive research, experience, and personal observations. I would like to continue to strongly encourage everyone to actively and positively share documented research information, anecdotal experience, and personal opinions, pro or con, on any relevant ASPS topic so that we can all learn and benefit from it, and then be able to make the most informed decision and the best treatment and Life style choices based on our own personal situations, needs, and philosophies.
With special caring and continued Hope,
Bonni